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Linus Geisler: Doctor and patient - a partnership through dialogue   © Pharma Verlag Frankfurt
Discussion with the person with AIDS
The epidemiological situation
The particular situation of the AIDS patient
The HIV test
Care of the AIDS patient
The AIDS patient and his relatives
/ sometimes feel that I am sleeping with
A patient
AIDS has the aura of both
cancer and syphilis.
S. Becker
Discussion with the person with AIDS
The epidemiological situation
Over 250000 cases of AIDS were notified worried-wide up to the end of April 1990, most of them in North and South America (153720), followed by Africa and Europe (33896). The number of cases reported in West Germany including West Berlin was 4863 at the end of May 1990. Following extensive research, the WHO estimate of the number of people affected by AIDS was raised by 2 million, and the organization suggests that it must be presumed that from 8 to 10 million people actually carry HIV (July, 1990). This increase has been especially dramatic in the African countries south of the Sahara, and in Asia. The WHO projections suggest that by the year 2000, 15 to 20 million people will be infected with HIV.

In Europe, the epidemic is spreading with a delay of about 2 years behind the development in the USA. Statistics obtained from the W. German office of Statistics show characteristics typical of AIDS, and a similar rise in the number of those with the disease. This means that very soon care of the AIDS patient, and those infected with the virus will become the responsibility of general practitioners, as well as all other doctors.
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The particular situation of the AIDS patient
The majority of AIDS patients are young and homosexual (75%). The homosexual man is still in a process of finding his identity. He has still to "come out". AIDS however forces the patient to "admit" concurrently both to his homosexuality and to a disease which is outlawed by society. Many homosexuals have a clear picture of all of the horror of the disease process, as most have ill friends, and almost all of them know of someone who has died of AIDS. The AIDS patient lives in a society where his illness will be subject to an emotional-laden (especially whipped up by the media) public discussion. This discussion about AIDS releases anxieties and fantasies about death, homosexuality, sexual perversions etc.

The patient is suffering from an incurable disease, and he knows this; however like every fatally-ill patient he ricochets between despair, hope and denial, and clings to every suggestion of "new treatment" that he hears about daily in the press. He experiences rejection, prejudice and restriction from the side of the media, from those around him and, not infrequently, also from those who are caring for him medically. Gregor Schorberger, a chaplain at a Frankfurt hospital, quotes deeply-wounding comments made to these patients: "Now you are paying the price for your disgusting life-style", or "We'll put him last, he will be dirtying all our machines again". The reactions of those around release such fantasies as "The Health Service won't treat me". "There is a group of doctors who would like to tattoo all HIV-infected patients nowadays, just as was done to the Jews and gays in concentration camps; they want to brand me like an animal". The AIDS patient is bombarded by inept headlines from the press "Are AIDS patients tomorrow's murderers?", "No civil servants with AIDS; Bayern takes the consequences", "No chance of cure in the next 10 years".

As AIDS is an incurable and potentially fatal disease, it has many parallels to cancer. AIDS patients also show the typical phases of denial, protest or depression. It has been shown however that AIDS usually releases more intense anxiety and fantasies than does cancer. There are specific stress factors as well as the severe physical, usually obvious, symptoms (weight loss, hair loss, Kaposi sarcoma):
The patient is suffering from a venereal disease, and knows that it can be further transmitted by sexual activity.
He usually belongs to a minority group (homosexual) or was already ill (hemophiliac or fixer).
He has to live with the additional burden of "AIDS hysteria", which can be manifest for example in an exaggerated anxiety about contiguousness (S. Becker).

There are in addition psychological changes caused by the disease, especially those of various forms of depression, anxieties, deliria and dementia (AIDS encephalopathy). The increased incidence of suicide in AIDS patients is explained by the particular psychosocial situation, in addition to the general readiness of those in their 20's to attempt suicide.

These factors explain why the AIDS patient (in contrast to the cancer patient) is under two additional specific stress factors:
Feelings of guilt and

Those who are incurably ill (such as cancer patients) already tend to have feelings of guilt. These are present to a greater extent in AIDS patients, because they are suffering from a disease which is mainly sexually transmitted. The homosexual AIDS patient considers that AIDS is the punishment for his homosexuality. This particularly affects those who had already unconsciously criticized themselves before the onset of the disease. This tendency of self-criticism is markedly increased by the judgements of guilt received from the environment (public and media). This means that the patients regard their disease as though it were caused by their homosexual life-style itself. This clearly reveals the sharp differentiation that society makes between "acceptable diseases" (coronary infarction) and "unacceptable diseases".

The cancer patient usually feels isolated, whether or not his family is caring for him, because of the lies that surround the situation. In contrast, the AIDS patient does not only find himself with this internal isolation, but he also experiences a very real external isolation from others; this includes the withdrawal or distancing of his family, isolation at or from work, and in housing, as well as the isolation associated with homosexuality itself. AIDS forces many who have broken off contact with relatives due to their homosexuality, to return to their family. This return is made more difficult by the two admissions that he must make (to his disease and to his homosexuality). Previous friends are no longer friendly or avoid him. In addition, the age at which he became ill (around 30) is often associated in homosexuals with the time of the life-crisis when it is becoming clear that he is homosexual, and not available for heterosexual relationships. It is this double burden of self-criticism and social isolation which explain the frequent occurrence of severe states of depression in AIDS patients.
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The HIV test
The HIV test is basically dissimilar to tests which are usually carried out to confirm or exclude the presence of an infectious disease. It is incorrect to describe the HIV antibody test as the "AIDS Test". The HIV antibody test shows whether antibodies against the virus are present in blood. There is no unique test for AIDS, as a positive result from the HIV test does not mean either that the patient has AIDS, or allows a definite prognosis (as according to our present state of knowledge, it can not be estimated what proportion will become sick later). Nevertheless to hear that there is a positive test result is extremely serious for the person involved. Not only has he become infected with the HIV virus, but it is very likely that he will become ill with AIDS and die. An "HIV positive" result is a tremendous blow, particularly as the majority of those tested have asked to be tested in the hope that they could be released from their anxiety about AIDS by this examination.

Experience has shown that most of those with a positive result initially react with helplessness, anxiety and loss of control, and in fact have a higher frequency (72.5%) of psychological disturbances than those with AIDS itself (52.5%) (J. S. Mandel). It also appears that HIV positive patients are more likely to commit suicide than a patient suffering from AIDS. A positive test confronts the involved person with a whole series of questions and problems in a shattering way:
You are healthy, but potentially fatally ill.
You are living with a time bomb: when will you become ill or might it never happen?
Who infected you, and whom have you infected?
What will happen?
How can you live; should you carry on living?
What is your social situation? (M. Frings)
These questions are particularly pressing, as, in contrast to cancer patients, HIV positive patients are usually young people, who, from a statistical point of view, should have a long life before them.

Therefore consultation about the HIV test always consists of two discussions. The first is carried out before the test. This should explain in general what the test can indicate, and what not, with a determination of what the test means for the person who wishes it to be carried out. The second discussion serves not only to give the result but also to explain the consequences and necessary behaviour. Both of these interviews have to be carried out. A. Jötten from the AIDS Advice Bureau in Frankfurt insists that all doctors who order an HIV test must be prepared to adequately pass on the findings. If the doctor is uncertain whether or not he can advise and care for a patient with a positive HIV test, it would be better that he sends the patient to a help center or one specializing in AIDS.

There are various grounds for the request for an HIV test:
There are people who would like the test just because it is available, even though there is no evidence that they run an increased risk.
Occasionally from people coming up to a significant change in their life (new job, marriage, desire for children etc.). A negative test result can spare these people a lot of anxiety.
A third group includes people who are definitely at an increased risk of infection (homosexuals, bisexuals, drug addicts, prostitutes or hemophiliacs), for whom there is a clear medical indication for the HIV test.
Finally there is a group who suffer from AIDS phobia. They create a particular problem for all who have anything to do with the care of AIDS patients. They are those who are firmly, but incorrectly, convinced that they have AIDS, and whose opinion can not be altered by medical examinations (repeatedly negative HIV test). They do not usually belong to a group which is highly involved, usually have already been tested for HIV antibodies with negative results, but nevertheless basically disbelieve the results, and repeatedly visit the different types of help centers. There is usually a feeling of guilt (condemnation of his own sexuality) underlying this markedly anxious behaviour. The patient is very concerned and restlessly drifts from one AIDS expert to another. They occasionally create the impression that they unconsciously desire that AIDS be diagnosed. They decide never to visit a doctor again after a negative test, but their resolve breaks when they are overwhelmed by anxiety once again.

AIDS specialists recommend that the HIV test should not be performed at all (even if there is a strong chance of a positive result), if nobody is available to care for the person after the result is given.

In no circumstances should the result be given over the telephone or sent in the post. The result should only be given during an extensive discussion, for which at least 2 to 3 hours are available in the case of a positive result. Even where the person knew that the result was likely to be positive, there is a great danger of suicide or panic-like behavioral disturbances immediately after the result is given. One soldier who was given a positive test result with the words "Congratulations! You have AIDS" reacted with panic and aggression, which should have been anticipated by his reply, "If that's the case, I will take another hundred with me". He returned four weeks later with recently acquired gonorrhea (Salewski). During the initial discussion, before the test, an answer should always be determined to the question, "What will it mean to me if I'm positive?"

As regards the question of whether the patient has to be given the complete truth; there is only positive or negative as an answer. Contrary to informing a patient that he has cancer, the person involved must be given the positive result, as only with this can he be motivated or obliged to change his sexual habits so that he might no longer be a source of infection ("safer sex"). The negative test result can also motivate the person to take preventative measures.

As regards the patient with AIDS phobia, it is important to initially take the problem seriously, as it is very stressful for the person involved. Structured discussions should be employed to work through the psychological aspects of the syndrome, but not to interpret. The patient should be encouraged to thoroughly think through all of his concerns, as this itself reduces the anxiety. Further tests should be discouraged. The patient should be offered further contacts and/or the chance of therapy tailored to his needs (special psychotherapy) (Jäger).
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Care of the AIDS patient
In most cases, the best care is provided for the AIDS patient when there is successful cooperation between doctors, psychotherapists, supporting organizations and self-help groups.

Nevertheless it is important to stress that the way in which a patient copes with the emotional side of his illness depends on the trusting relationship which the patient has with the doctor who is primarily responsible for his care (S. Becker). In other words, the AIDS patient needs a firm pivot, such as his general practitioner, at the center of the group of helpers. It can be that additional care is required if there is a "basic illness" (drug-dependence, hemophilia). The decision about who "should do what" should be based on the motto: "As much as possible as an out-patient, and as much as necessary as an in-patient."

"Self-condemnation" and "social isolation" are the major stress factors for AIDS patients, and psychosocial care is directed at these. It is therefore important that the helper (whether doctor, member of the nursing staff, psychologist or chaplain), think about their own fantasias and anxieties, as they are also a part of a society that has developed its judgements and prejudices about AIDS. It can be advantageous to examine definite, proven knowledge about homosexuality, in order not to be guided by prejudice.

In principle, the same conditions apply to discussions with AIDS patients as to the care of those with other serious disease, and include empathy, the ability to listen actively, and genuineness of the approach. The patient should be accepted as he is, and should be allowed to speak openly with no concerns about moral judgements on his problems. It is important to meet him "where he is". Suppositions which are of particular concern to AIDS patients, should not be headed off, but thought through to the end. The realization that time is limited sometimes makes life more worthwhile, and serves as a motivation to work out oneself and one's life (G. Höchli, B. Jäger-Collet). The AIDS patient also goes through the typical phases shown by the cancer patient (repression, anger, depression) before he is finally able to experience equilibrium and have a cognitive approach to his situation (see chapter "with terminally ill and dying patients" link). The responsibility of the therapist is to accompany the patient on this path, and not to try to accelerate these steps in development (which probably would not work in practice anyway). Höchli and Jäger-Collet have summed up the guide-lines for working with AIDS patients as follows: "The therapy has more of a supportive than a revealing character. Positive feelings and thoughts are encouraged, possible improvements in health accentuated, conflicts resolved, anger and resentment worked on, 'unfinished business' discussed, focusing on the immediate and near future, preventative measures instigated, and concerns thought and worked through to the end."

AIDS patients in particular have an intense desire to find answers to questions about the meaning of life, about God and eternal life. Schorberger writes from his experience as a hospital chaplain dealing with AIDS patients: "We have found that there is no other ward from which come so many requests for religious encounter; this can be for prayer, or a service at the bedside, it can be a request for daily bible readings or daily communion for the sick, for confession, discussion with a priest or anointing of the sick ..."

Coping with illness is especially hard in the case of homosexual AIDS patients. One of the main tasks of therapy is to restore the identity by a process of recognition (Who am I?, What am I like?, What do I want?). The patient often experiences long and difficult routes to self-discovery until he can finally state, without anxiety, "I am what I am, and what I am needs no excuses" (from a song in the musical "Le cage aux folles").
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The AIDS patient and his relatives
It is especially important to involve the relatives in the care of the AIDS patient, as they help to reduce the particularly marked feeling of isolation. Usually the disease is a great burden and stress for the relatives. The relatives therefore require intensive counseling, to prevent them becoming an additional burden for the patient, rather than a significant support and help.

Initially it is important to remove unfounded anxieties about infectivity by factual discussion. The relatives should be told honestly that their willingness to stand by the patient with AIDS can by very helpful, but also very difficult and stressful. They have to be informed about the expectations and reactions of patients with AIDS. They should know that anxiety, rage, despair or accusations can arise (as with cancer patients), and that they should not take these reactions personally. Relatives should also know that AIDS patients go through stages where they are totally unable to cope, during which they need somebody to lean on, and by whom they can cry. However the AIDS patient does not always want to be reminded of his illness, but would far rather carry on as usual with his daily routine, to the extent that it is possible. Therefore every form of excessive care should be avoided. It is not always necessary to talk, as non-verbal signals such as smiling or touching are just as good as conveying affection, and creating peace and calm. It is not advisable to evade the patient's questions about things that are very much on his mind, for example, to appearance, progress of the disease, expectations for the future etc.

Particular problems arise when the parents or spouse first find out about the patient's homosexuality or drug-addiction when AIDS is diagnosed. Possible prejudice and incorrect ideas about homosexuality have to be confronted, and the relative informed that homosexuality can be regarded as a variant of human sexuality and behaviour. As the AIDS patient is very often resigned to his illness and total life situation, all references implying guilt and prejudice should be avoided, in order not to deepen the hopelessness of the patient. It can be helpful to the relatives to be mindful of the fact that the illness is caused by a virus rather than the life-style of the patient. The illness should be discussed openly with relatives, friends, neighbors and work colleagues. The parents of drug addicts are also able to join a group for parents, and self-help groups for parents of AIDS patients are also forming. 

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Linus Geisler: Doctor and patient - a partnership through dialogue
© Pharma Verlag Frankfurt/Germany, 1991
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